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I don't know what to do anymore...

Sat, 07/15/2017 - 03:12
Hey to anyone who actually reads this, I'm Aleisha, I'm 16 and in Grade 12. I have a million things wrong with me. They have been trying to figure out me epilepsy for 3 years now, and still haven't. I have absences, auras, tonic clonic seizures, myoclonic jerks, migraines, concentration problems, paralysis in my legs sometimes, and severe anxiety. WAHOO! I honestly feel like I have lost 90% of my dignity. I had my first big seizure at a massive city festival in front of thousands of people. I was always worried about having them at school, but everytime I did, there weren't many people there, and they were mostly teachers and my friends... Until yesterday. Yesterday we were just finishing the last race of the sports carnival and I had a seizure. In front of hundreds of students and teachers that I have to see every day. I peed my pants, convulsed, cried like an idiot, fell down, got wheeled of in a wheel chair unconscious and did I mention peed my pants? I was almost six months clear. I feel like a failure. Does anyone know if there is anything I can do to get it under control. I am open to anything, absolutely anything because my plans haven't worked haha.


Have you talked to your neuro

Submitted by disneylover123 on Sat, 2017-07-15 - 19:17
Have you talked to your neuro about other possible treatments besides normal medications? 

since you don't say what you

Submitted by Amy Jo on Sun, 2017-07-16 - 08:40
since you don't say what you and the docs have done, I don't know if anything I ask/suggest will matter..are you working with a pediatric epileptologist? for all epilepsy patients seeing an epileptologist is associated with better control and few meds (fewer meds usually means fewer side effects and better quality of life). how much do you know about your epilepsy? I am certain that no one else cares like you do. often educating yourself provides you with some info or understanding that can help you.has your doc checked you for celiac issues? have you asked your doc about proactive measures you can take (reducing triggers, better sleep/diet, yoga or other stress relieving practers, etc..)have you asked your doc about dietary therapy?  MAD might be enough to really help or ketogenic might help (MAD is probably easier and you might not need to start that in a hospital).have you asked your doc if there's a surgery that might help, either a resection or VNS (don't think RNS is available for under 18 but that's another one)?

do you have sleep problems

Submitted by iceburg on Fri, 2017-07-21 - 22:49
do you have sleep problems,are you hyperventilating,is your mouth dry.etc

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